College should be less stressful than awake brain surgery, right? #collegeaftercranio

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I thought maybe I would make it through the first, or second year of college. Then I would have a recurrence, go through treatment again, and die. It wasn’t just a fear; it was statistical and founded in research. Brain tumors are the number one killer of those under the age of 19 and with my tumor type a recurrence within the first two year isn’t all that uncommon. Now at 21, I am graduating college. I have not had a recurrence, and I am stable. My next scan is coming up, but I’m not even worried. In fact, I forgot that I even needed to make the appointment. Whatever happened to scanxiety?

I never thought that I would make it to this point. When I entered my freshman year of college it had been less than a year since my awake-craniotomy. I was still having flashbacks to surgery on nearly a daily basis. My life was living in fear moment to moment, wondering when the next seizure would hit, when I would be told to pack up and come home to live with my parents because I couldn’t safely live on my own anymore. I thought that I would go to school for as long as I could, learn as much as I could, and just try to experience as much as possible for as long as possible.

This didn’t really hit me until I defended my thesis because a thesis is something that people plan for. They start their research early, they select committee members, and they write for years. I did so, but I didn’t expect to actually follow the plan through to the end, because I didn’t think that I would get the chance to. The night before I defended I realized how shocked I was to be in this position. It was so…satisfying. The same professor I met my shell-shocked freshman year, back when I couldn’t sit through a film in class because the sound was too loud, was the same committee member that I met with every week this semester to put the finishing touches on my thesis, and the same committee member who saw me blossom into someone who believed in the possibility of a future.

For so long I just didn’t think that one would come. I was so afraid of tomorrow, of next week, next month, the next scan, that when I finally started being able to plan years in advance it seemed beyond my wildest imagination that I would actually get there.

My awake-craniotomy took place 4 years ago today. Things that would have been long-term goals 4 years ago are now just things on my to-do list for this month. Things that I never thought I’d see happen are now daily occurrences, in the best way possible. I got better, but not everyone does. I had a great support system, the financial resources to weigh my options and select my surgeon, and the time to do so. My latest MRI was last month, and everything is still stable. Even so, every day is a tightrope walk of accounting for sleep, taking medication, and managing symptoms. My life wouldn’t be anything like it is now if it wasn’t for this patient experience, and I wouldn’t change it.

Community engagement has always been how I’ve processed. We’re talking about the financial impact of being treated for a brain tumor during tonight’s #btsm chat (6pm PST/9pm EST) – all are welcome to join, share, and learn.

Here’s a video of me giving an update four days after surgery, four years ago for a fun flashback.

This is a HUGE milestone. Today marks three years post-resection, without recurrence. I have a lot of mixed emotions to describe how I feel about today, but am predominantly overwhelmed with joy and disbelief.

I was incredibly privileged to have access to the surgeon that I did, and I will never ever stop being grateful to Dr. Mitchel Berger at UCSF for what he did for me.

Right after my surgery, I didn’t plan more than three seconds in advance. My eyes would flicker from one corner of the room to the next in amazement that I was still there, and that everyone else was still there with me too. My friends and family never left my side, and I was lucky for that. Many people in the brain tumor community can’t say the same, and I cannot thank all of you for staying by my side when I needed you the most.

When I came to ASU just under a year after surgery, I had a hard time planning more than three hours in advance because I would get so fatigued. Making plans with friends was difficult because everything was so subject to change. But my friends were awesome and so incredibly accommodating.

Then, six months or so went by and I mentally advanced to allow myself to plan three weeks out. I let myself think into the future. The first semester of my freshman year ended, and I advanced to planning a few months at a time in advance. It felt strange, but I was still living from one scan to the next in terms of what I’d let myself think and do. I wasn’t thinking about the next academic or calendar year, summer plans, or classes for the next year. I couldn’t let myself do that because it wasn’t safe to do yet. Then last year, something huge happened. After two years of good scans, I started to plan years in advance. Now, I’m envisioning myself three years from now working in the field, walking around the halls of a hospital, visiting patients. Three years later, and I can now see myself living in the future. This is a gift that I am very privileged to have, and I am not taking it for granted.

I felt like no time passed between the first year after surgery, and that hardly any passed even when I reached the second. Year three finally feels a little bit different. I’m feeling personal growth. I’m finding parts of my identity outside of my health. And I’m succeeding in so many new, different pockets of life. I recently graduated to having scans every 6 months (3 years later and I’m still forever sleeping in a magnet..), so that’s something to be proud of as well. Here I am, now taking on year four.

I read somewhere that scars like this are like a tattoo, but with a better story. My story continues.

Now I can say without question that my brain has been stable and without a recurrence for two years! I waited three weeks to hear back from Dr. B, but when I did, I was relieved to read “no new enhancement or signals around the resection cavity.” Many of my friends who have been diagnosed with brain tumors experienced recurrences within the first two years of their surgeries, so for me, remaining stable for two years is huge.

The longer it takes for me to hear back about the results, the more my mind wanders. I had the entire rest of the year planned out in the chance if the scan showed a recurrence after waiting three long weeks. I pictured myself biking to the nearby CVS to pick up a prescription of Temodar, an oral chemotherapy pill used to treat brain tumors. I wondered if I would still be energized enough to bike to class, or if I would have to call campus services to utilize one of their golf carts that transports people with leg injuries around campus. I wondered if it would still be safe for me to live alone while starting chemo. I had a nightmare about the dreaded mouth sores that some people get while on chemo. I pretended that I wouldn’t have to do radiation in combination with chemo, because that wouldn’t fit well into my class schedule. I thought out so many details that no one should ever have to think about, yet 688,000+ people do every day. This is just another day of my life in college post-craniotomy.

The new plan is to have my scans take place every 6 months now. See you in March, giant magnet!

Two years ago today I had awake brain surgery. All 50 (technically 49) stitches, a brain drain, oxygen tube, multiple arm and toe IVs later, I emerged from the OR. My eyebrows looked great, but the rest of me was definitely not ready for senior photos. I look at the photo below and see power. I see my body’s resilience. Perhaps most importantly, I see me smiling in my sleep and think to myself, “just another day in the life,” because it’s true.

I’ll spend most of the day wondering how I got here. How I got to a point where professors are surprised that I’m the one who emailed them about brain surgery and epilepsy when I look so “normal.” I originally planned on posting a recap of what I remember from the morning of, during, and night following surgery, but I deleted it. I’m sure that it would have made for a great reading, but it just didn’t feel right. Maybe next year. People have asked why today is so important to me. They can understand how one year later was significant, but are confused as to why I find two years later to be just as meaningful. The answer is simple: Awake brain surgery isn’t just something that you undergo and then forget about. It’s not that you don’t want to, but rather, that you can’t. I take the tranquilizes that are anti-seizure medications 3x a day, and they are a reminder. I am cognizant about the amount of noise I can be around before it completely drains my energy, and they are a reminder. I have to be aware of exits in the room so that I can leave as soon as a migraine is coming on, or if I wish to be elsewhere when a seizure makes its presence known in full force. I have to be on duty at all times.

When my Dad helped move me back into college this year he asked me if I remembered what Dr. B had told him when I was resting in the ICU. I didn’t. He told my Dad that “You just gave her a shot at life.” And here I am. I’m a college student who wakes up every day on my own, goes to class, makes the Dean’s List, makes friends, and dates like any other college student out there. I am normal in many ways thanks to Dr. B.

I had access to one of the world’s most talented neurosurgeons. I didn’t have to “fight” as hard as some might think. I got lucky, and now, I manage my body and brain the best that I can. I occupy a body that could have, would have, should have etc. been many different things than it is today. The combative language that people use when describing chronic illness make it seem like you are either aggressively using all of your energy to stay alive, or that you have given up. I didn’t have energy to expend either way. I woke up every day and took the medication that I was prescribed, and it worked out. I woke up in the middle of the night when the steroids called out to me. I drank the chocolate milk that they commanded me to crave. I went for short walks and held onto my Dad for balance. I watched movies, and I napped in the two months immediately following my brain surgery. I existed for the time being, and that was enough. That was enough to save my body so that I could rebuild my mindset and fully acknowledge a shift in perspective. Now, if I spend too much time thinking about the surgery I’m bound to go insane. How could it be that I’m this functional after all that happened? I have friends who have spent extra time inside hospital walls after trying to answer that very question. But, if I don’t acknowledge the surgery, then I’m selling myself short of my incredibly miraculous history. It’s a fine line to walk.

And just like that, it hits me. Out of nowhere a memory takes over while biking to class. I woke up in the ICU. My throat was dry, and my voice was hoarse. I assume that I had a tube down there at some point in time. I stayed awake in awe for much of my first night in the ICU. I remember a TV being on but me not watching it. The light from the screen helped make the first video that I made, though. And then I’m back. I’ve reached my destination and I know where I am. How I got there is another story. There are moments like that, and when my speech slurs, that I wonder and worry, am I just tired, or is the tumor back? Regardless, here I am. I’ve reached year 2. If I got to do it all over again, I want to say that I wish I wasn’t awake for the surgery. But, I’m not sure if that’s true. Those memories ground me, and I am undecided. Our own experiences are our best teachers, and I’m still learning how to process some of them. I’m headed in for my latest scan this afternoon. It makes sense to double check two years stable by making sure that the tumor (or rather lack thereof!) is still stable, right? This will be two years of an every-four-months scan protocol, and I am hoping to have the scans bumped back to every six months after today. As always, I’ll send the disc out to UCSF for Dr. B’s review.

I recorded videos every day for the first week, then every month, and stopped somewhere around 6 months after surgery. I recently went back to watch them, and didn’t remember taking any videos but the first one. If they’re fascinating to me, they might be to you too. Take a look:

Today reminded of how much I adore my surgeon. He is such a sweet man. I send him updates for big occasions (ie birthdays, graduation, milestones, etc.) and he always responds within hours. Below is today’s response. Fun fact: he was an all-american high school football player and started for Harvard’s football team before going to medical school.

I enjoyed a passage from one note in particular today, kindly written by a new friend. It reads: “Every one in a while, you meet someone who’s immense strength is apparent before you even get to know them. You, my dear, are one of those people!”

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Year one was full of regrouping and adapting. Maybe I’ll figure out how to write a physics lab report during year two.

One year ago today I gained more in perspective than I lost in grey matter. Today marks one year since I underwent a six-hour craniotomy, during which I was completely coherent and awake for forty-five minutes. It still baffles me that it took longer to fill out college applications than it did to sign my life away in paperwork. Last year September 4th was the first day of my senior year of high school, and I spent it in the ICU instead of going over course syllabi.

My brain tumor was in the left insula, a nub tucked in between the frontal and temporal lobes, which is the speech and language hub for most right-handed people. I was told my ability to speak would be severely compromised after surgery, if I were even able to even talk at all. In the weeks leading up to surgery I secretly practiced writing the alphabet with my left hand in preparation for possible right side paralysis. I was proud of how I lived my life up until that point, and knew that regardless of the outcome of surgery, my ripples had already spread around the world.

I emerged from surgery with phenomenal results. I have no visible side effects other than a scar hidden by my hair, the only remnants of the fifty stables that were once there. Under the surface of my head are four plates and eight screws. Their presence and varying textures on the side of my head serve as a daily reminder that nothing I face in life will be more difficult than that surgery. Although not a week goes by without a seizure or headache, working memory difficulties, and energy challenges, I would not choose to alter my circumstances. These obstacles make me a more comprehensive person. I now take the time to realize and appreciate the capabilities I had prior to my surgery, as well as what I have acquired over the past year since.

Today, I am officially ONE YEAR stable. Brain tumors are the second leading cause of cancer related deaths for those under the age of eighteen, and here I am, still standing and navigating a college campus (NBTS). My next MRI, part of my every four months MRI regimen, takes place in two weeks. Thank you to everyone who has cheered me on with support and encouragement over the past year.